Should I try to get my child a wheelchair?

[Who'syourMickey]

In four months we go on a wish trip to WDW. Currently I take our wagon everywhere. I load it in the back of the minivan and pull our daughter in it instead of a wheelchair. My daughter will be turning 7, and weighs 47 lbs. We've only made it this long because we homeschool and there are grocery carts in most places that we go that she rides in and we don't go anywhere without the wagon.

I mentioned to her rheumatologist about needing a wheelchair and they were like oh no we have all these wonderful drugs now...she won't need a wheelchair. How do you go about getting a wheelchair for a child, without the drs just wanting to use stronger and stronger immunosuppressive drugs and in the mean time...she is getting heavier to pull along?

I wonder how we will get through the airport to disney, but I thought maybe we could get luggage that a larger child can ride on as it is pulled through the airport.

How big of a child can go in the strollers at disney? and do they rent child sized ecv's?

Shelly

 

[SueM in MN]

Since you are going on a Wish trip, they will take care of a wheelchair if you need one. Make sure to mention it to the people who are arranging the wish.
This is some general information.

They won't rent ECVs for use by anyone under the age of 18 at the parks. The off-site rental places also say that they won't rent for anyone under that age of 18. They sometimes make exceptions for an older minor who uses an ECV at home, but you would not be able to rent one in any case for a 7 year old.

If you look in the disABILITIES FAQs thread near the top of this board, you will find information about renting wheelchairs. You will want to rent a small size (hopefully pediatric) wheelchair from one of the off-site places. An adult wheelchair will be too big for her and put her in an uncomfortable position that will make her stiff (I'm assuming she has Rheumatoid Arthritis).
The park strollers might be OK because she would be able to change her position. They are large enough for a small 12 yr old.
This is a link to the stroller info page at allearsnet.com which has pictures of the park strollers. You can rent a double stroller for a bit more room.

For a wheelchair for home use, I think you need to be very clear to the doctors what you are doing right now and how often you use either the wagon or a shopping cart. Lifting a 40+ pound 7 year old in and out of a shopping cart could be dangerous for both of you - she could catch a leg and fall or you could hurt your back. If your child sees an Occupational or Physical Therapist, they can help you out with this. The doctors might be concerned that if she gets a wheelchair, she won't walk, but there are many times when the distance may be too far for her to walk. Just having a wheelchair doesn't mean she is giving up walking, just using it to avoid overworking.

 

[Charleyann]

Since you are going on a Wish trip, they will take care of a wheelchair if you need one. Make sure to mention it to the people who are arranging the wish.
This is some general information.

They won't rent ECVs for use by anyone under the age of 18 at the parks. The off-site rental places also say that they won't rent for anyone under that age of 18. They sometimes make exceptions for an older minor who uses an ECV at home, but you would not be able to rent one in any case for a 7 year old.

If you look in the disABILITIES FAQs thread near the top of this board, you will find information about renting wheelchairs. You will want to rent a small size (hopefully pediatric) wheelchair from one of the off-site places. An adult wheelchair will be too big for her and put her in an uncomfortable position that will make her stiff (I'm assuming she has Rheumatoid Arthritis).
The park strollers might be OK because she would be able to change her position. They are large enough for a small 12 yr old.
This is a link to the stroller info page at allearsnet.com which has pictures of the park strollers. You can rent a double stroller for a bit more room.

For a wheelchair for home use, I think you need to be very clear to the doctors what you are doing right now and how often you use either the wagon or a shopping cart. Lifting a 40+ pound 7 year old in and out of a shopping cart could be dangerous for both of you - she could catch a leg and fall or you could hurt your back. If your child sees an Occupational or Physical Therapist, they can help you out with this. The doctors might be concerned that if she gets a wheelchair, she won't walk, but there are many times when the distance may be too far for her to walk. Just having a wheelchair doesn't mean she is giving up walking, just using it to avoid overworking.

I have a child with arthritis too as well as cystic fibrosis. WE use a wheelchair for endurance purposes and when he is in a flareup and when he has difficulty breathing...With arthritis, it would be very hard to do Disney without one. We got a wheelchair through our OT. Rheumatologist doesn't like them because they are afraid children will stop walking altogether. However, drugging them up on codine is not the answer either!

We are finishing a "wish " this year. My son wasn't able to finish his last year. The wheelchairs didn't cost anything for the wish kids and either did the strollers. The strollers are hard plastic with no cushion....probably uncomfortable with arthritis. My son was 9 years old and he was too big for one last year. The adult chair are too big, but they are softer. Your best bet is to bring one from home or rent one. I am very happy I took my DS from home! I am sure the wish organization could help you set this up! Good luck and enjoy!

Charleyann

 

[OneLittleSpark]

My (now former, as I refuse to go back to him again) PT didn't want me using a wheelchair either. He kept trying to force me to use crutches (which would do more harm than good, for me), and said he couldn't refer me to get a wheelchair because he would be "laughed at" by his colleagues . Anyway, I then pressed the matter with my doctor, who directed me to the Red Cross as they rent chairs out. In the end I bought my own chair out of pocket, as I had to return the rental.
My point (if rather convoluted) is that you have to keep pushing and fighting until you get what you need. If one specialist won't help you, try another one. It'd be in everyone's best interest for her to have a chair to use when she needs it. Hopefully it should be easier for you than for me as you have a diagnosis to work with.

Good luck, and I hope everything goes well!

 

[Who'syourMickey]

Yes, she does have rheumatoid arthritis. I am still new to knowing exactly how it effects her since she doesn't verbally tell me things like what things make her stiff. She might be cranky and we don't get why. She will hand me a wrist or foot to massage or ask to be carried or ride in the cart. She might just not brush her teeth but it was up to me to figure out that the reason why was because it hurt her wrist. Same with not eating. For a while she wasn't eating because it hurt her wrist to operate the fork and spoon. I give her plastic cups now instead of glass for her milk because they are much lighter. We've had to figure out all this on our own. Knowing that hard surfaces or sitting in one place too long bothers people with arthritis helps..

I feel like I do need to call and try to get a wheelchair for those times. I will call and explain things to the doctors since wheelchairs are more comfortable than strollers. I didn't even think of that. Can you recommend a good kind of wheelchair that medicaid might pay for...maybe I can just order it and submit it to insurance without going through the doctor at all.

 

[SueM in MN]

I feel like I do need to call and try to get a wheelchair for those times. I will call and explain things to the doctors since wheelchairs are more comfortable than strollers. I didn't even think of that. Can you recommend a good kind of wheelchair that medicaid might pay for...maybe I can just order it and submit it to insurance without going through the doctor at all.

Medicaid or insurance will not pay for the wheelchair unless you have a doctor's order and a letter of justification for it. The order has to come from a doctor - not necessarily the Rheumatologist; if you have another doctor who is more 'agreeable' , get that doctor to do it for you.

Your child would really benefit from an OT (Occupation Therapy) and a PT (Physical Therapy) evaluation. The OT could help you out with some of the problems you are having (like a toothbrush or eating utensils with the right kind of handle can help to prevent pain in her wrists). The PT looks more at bigger muscles and things like appropriate wheelchairs, etc.
They would be the best people to help you with choosing and getting justification for a wheelchair; they are trained in knowing what type of seat, etc would be best to prevent future problems and make your DD as independent as possible.
Some of the things (like correct toothbrush) may seem small, but will help to prevent problems later on. Anyone who has pain tries to move in a way that makes the pain less. Sometimes that means moving in ways that are not good for the joint or means not moving that joint at all. When something isn't moved, the muscles tighten up and make movement even harder, so the person does even less. There is a saying "what you don't use, you lose" and that is very true. The more you can keep your DD moving, the better off she will be in the long run. Doing the little things now will help to preserve the movement she has as long as possible.

You do need a doctor's order for "OT and PT to evaluate and treat", but again, that order doesn't have to come from the Rheumatologist.
Schools also have OT and PT to evaluate and treat kids in the schools. I saw in your first post that you home school, but that doesn't prevent you from using some of the school services (like OT and PT).
Where ever you find the OT/PT, it's best if you can find one who is comfortable and knowledgeable about kids. Your child has to have rapport with them in order to be able to work with them. An OT or PT comfortable working with kids will be able to know what questions to ask to figure out what is hurting when your child is 'grumpy.' It's hard for you because you are blind to what might be the problem and it's hard for young children to be able to really localize and verbalize what is wrong. They just know they are uncomfortable.
Good luck

 

[mcco5543]

A doctor is supposed to inform you of all your options for your child, but is ALWAYS supposed to go with what YOU decide is best. If you know a wheelchir is the right thing then you have to INSIST! Dr's are not God, do not let them intimidate you into thinking they always are right. YES, they have more medical knowledge than the average joe, but they are not YOUR CHILD'S PARENT. You are!

If this doctor will not help you get a wheelchair, find someone who will. Talk to your family physician about finding an orthepedic or whatever type of Doc you need.

Good Luck!

 

[mcco5543]

I have a "quckie" and love it. You'd get a wheelchair usually through the physical therapy department. They have a wheelchair vendor come out and show you chairs, you pick a color and a seat cushion and a back and everything. It's like creating a custom car. Very cool!

 

[Cheshire Figment]

Just as a side note. You cannot use a wagon at any of the WDW parks. You would have to use a stroller or wheelchair.

Wagons, which are pulled, are prohibited in all the parks (including the water parks) and you will not be allowed to bring one in.

 

[OneLittleSpark]

OK, this is slightly side-tracking, but have you got / considered getting an electric toothbrush for your daughter? It's a little thing, but it might make teeth-cleaning a little easier on her wrists.

Good luck with the chair, you can get some pretty cool designs now, so she should have some fun looking at all the options ! I don't know what your insurance will / will not cover, but you can get a number of peds chairs that are adjustable, so they can 'grow' with your child. Do you think she'd be able to self propel, or would her wrists prevent that? I have undiagnosed joint pain in my ankles and wrists, but for some reason it doesn't seem to upset the wrists too much (unless its a bad flair day), but it may not be the same for her.

Good luck, get pushy if you have to and I hope you find a solution that works well for all of you!

 

[KPeveler]

sometimes you can find child wheelchairs on ebay as well, although those get expensive.

i too am fighting with drs about chairs. they see it as "giving in" but for me it allows me to do more. i do not need it all the time, but there are days i cannot even get around my apt. so i am getting one for myself!

check out the sticky at the top of the page about renting larger child strollers and wheelchairs... there are some good things!

 

[OneBlessedFamily]

Are we allowed to request a wheelchair even though our son doesn't use one at home? He has tricuspid atresia/hypoplastic left heart, and while he can walk and stuff at home, it's hard for a long long day.

We are also taking a wish trip.

Mary

 

[KPeveler]

absolutely. disney cannot make you "prove" a disability (according to ADA law!). i use a chair there, although I do not at home (yet). you use whatever you need to enjoy the trip!

 

[OneLittleSpark]

K, good luck with your fight for a chair, I hope it all works out for you, and that you get what you need. A chair is not 'giving in', in fact, quite the opposite! By using a chair, you'd be refusing to give up, no matter what your body threw at you. I hope you can make them see sense.

 

[Talking Hands]

to me wheelchair = independence
doing things when I otherwise would have to stay home or take loads of pain meds.

 

[SueM in MN]

You really want to work with an OT and PT because some of the easy solutions you can see might actually make things worse.
An electric toothbrush is going to do the work of brushing, but some of them are heavy and could cause more wrist problems.
Also, a wheelchair that doesn't fit might put her out of alinement and cause more problems later on.

 

[Who'syourMickey]

I did get her a crest spin brush a couple weeks ago. I haven't supervised the brushing or checked on the progress on how it is working for her yet. OK...so schools have OT and PT? Maybe I can call the public school tomorrow...it is almost the last day of school though. I wondered where people got the special forks and spoons. I am concerned that by not having a wheelchair she is not independently moving....being pulled in a wagon is not as good but I was shut down by the doc and kind of scoffed at when I asked for a wheelchair last september. The other thing is once you get the wheelchair...how do you get it around? Does that mean you need a lift in a van and a ramp on the house too or is there a more portable wheelchair that still allows her to operate it with a joystick?

Shelly

 

[Who'syourMickey]

So if dd is in a wheelchair and Grandma is coming on the trip (she lives with us) and she has a bad knee and planned on renting an ecv offsite for the trip. Will the wish folks be able to find a van that will hold 1 wheelchair and 1 ECV? Yikes! I might be overthinking as we haven't been assigned our wish volunteer and they probably know all this...but since two of our other children have aspergers I like to not have any suprizes and get the logistical challenges all worked out ahead of time. I read another thread about the difficulties of getting through an airport with a wheelchair. That sounded horrible. Also I don't want my daughter to have a self image that she is sick or disabled. My feet get tired so I ride in a wagon sounds much more kid friendly and less disabling than....I have a disease and need a wheelchair. How would you present a wheelchair to a child without giving them the stigma....it's kind of a major deal.

Shelly

 

[SueM in MN]

The other thing is once you get the wheelchair...how do you get it around? Does that mean you need a lift in a van and a ramp on the house too or is there a more portable wheelchair that still allows her to operate it with a joystick?

Shelly

The wheelchairs that operate with a joystick are power wheelchairs. Power wheelchairs are very heavy and a lift or ramp in a van is needed to transport them. Plus a ramp is needed to get into the house.
Most of the time a power wheelchair is not recommended (and insurance will not pay for one) unless the person can't use a manual wheelchair. Because the only a small hand motion is required to move the joystick to drive a power wheelchair, many people can lose range of motion in their hands, arms and shoulders from driving a power wheelchair.
My youngest DD has cerebral palsy, which is another condition where you lose function because of tight muscles. She can't walk and uses a wheelchair fulltime. She has a power wheelchair that she uses outside the house and a manual (push) wheelchair that she uses inside. She didn't get her first power wheelchair until she was starting high school because at that point, she was not able to move the manual wheelchair fast enough to be practical. She just got a new power wheelchair and even though she can't walk at all, it took over 6 months from the time she was fitted for it until it was finally approved (and it was a replacement for her old one, which was worn out and no longer fixable).
She still has full range of motion in her hands and arms (probably from using her manual chair in the house), but many of the other girls in her wheelchair dance class have lost a lot of range and some have very little range of motion in their hands because the major movements they make are just small movements to operate the joystick.

You want to conserve your DD's range of motion as fully and as long as possible. A manual wheelchair would be a better choice for what I think the needs are from what you have written (and much easier to manage for you). Lightweight manual wheelchairs weigh about 25-30 pounds and are foldable. That means you can put it into a car trunk or the back of a van and if you need to get it into the house, you can lift it up a step.
Lightweight manual wheelchairs don't take a lot of energy to propel, at least for short distances and using one would be a lot better than a wagon or a shopping cart.
I have seen older kids (like 10-12) with arthritis using ECVs (power scooters); ECVs are a better choice for many people who can walk, but can't walk distances. They are less expensive to buy and are made so that they can be partially taken apart and transported in a car trunk.

A doctor is supposed to inform you of all your options for your child, but is ALWAYS supposed to go with what YOU decide is best.

That isn't quite correct.
If you decide something is correct, but it is not medically necessary in the doctor's professional judgement, he/she would not be correct to go along with it just because you want it. For example, if the person wants a wheelchair, but there is not enough medical justification for one, the doctor would be committing insurance fraud if he/she says it is necessary and signs an order for one.

The doctor is supposed to inform you of all your options that meet the medical needs and also should explain why something is not medically necessary in their opinion if you think it is needed.

 

[Forevryoung]

Also I don't want my daughter to have a self image that she is sick or disabled. My feet get tired so I ride in a wagon sounds much more kid friendly and less disabling than....I have a disease and need a wheelchair. How would you present a wheelchair to a child without giving them the stigma....it's kind of a major deal.

Shelly

I don't have children but I have worked with many children with various disabilities. Many many many many times it's the parent's mentality that set's the child's mentality especially at your daughter's age. If you see it as a tool to gain her independence a "look what you can do by yourself if you have x" kind of outlook, she will view it more positively. If you look at it as "you need x because you can't do y" it puts a negative spin on it and makes people think that the are deficient in some way and require help.

Clearly she doesn't have to use it all the time. Remind her that it can be for places where she would get more tired then everyone else and she will have a better time if she isn't in pain. Maybe you can show her the colors that the seats come in these days (if you think that would be something she would be into). Maybe have her test one out and show her it's more comfortable and freeing than being pulled in a wagon.

I know it's not all about mentality but I truly believe that stigma and self image are about how loved ones view you combined with their expectations and how you see yourself. Be a role model for your daughter even though I'm sure seeing her fitted for a wheelchair and using one will be the farthest thing from easy.